Wednesday, November 16, 2011

I realized yesterday, after I caught you up on the results of our IVF journey, that I've left you hanging on several other topics. So today, because I am sad and unmotivated, I'll just post random, gratuitous and adorable photos of the boys from today...

and also update you on things like...

Genetic Testing

In July, I wrote that Gavin was getting some additional genetic testing. The results had come back that Gavin had a small deletion on his third chromosome - and it was a "familial variant" which means it came from me or Ed. The official name, for any genetic junkies like me, is 3p12.1. So he went back for more testing, and so did we. He was also tested for FG Syndrome which seemed like a good fit, but the results came back negative for that. The final results came back right before I started IVF (otherwise known as: when time froze). It turned out that Gavin inherited the small deletion from me. What does that mean? Not much. (except to add to my Mommy guilt) It's possible Gavin's genetic issues don't even have a name yet. But as science improves, we get closer to a diagnosis for him. I would say that 90% of the time his "diagnosis," or lack thereof, is the last thing on my mind.

Gavin's Special Needs Bed

See: When time froze when we started IVF. I have the insurance check in my "to do" pile but haven't sent it yet to the bed manufacturer. I'm considering this my formal reminder.

Brian's Evaluation

The results came back from Brian's big evaluation. No big surprise, they said he had a speech delay. They also said he had some developmental delays. I took that with a grain of salt - there were things that we know he can do (and does on a daily basis) but he didn't perform during the evaluations. But he was scored low for not dressing himself. I guess that's my fault - I always dress him. He helps a little, but he could never put all of his clothes on himself. I didn't know 2-2 1/2 year olds did. They had one single recommendation for a pre-school with a special-ed classroom. I go to visit with Brian early next week. I hope I like this school because, believe it or not, I am pretty convinced that Brian would LOVE pre-school for a few hours a week. He's fun to watch with other kids and I think he will really thrive.

Help at Home

I have had a string of bad luck finding a replacement since Miss Katja left. She is here Tuesday and Thursday morning's for 3-4 hours to help me, but the rest of the time she's happy at my neighbor's house. If you forgot, I had to find a replacement for Katja after she told me that she couldn't do the Hyperbaric Oxygen with Gavin - which is a big part of the job. But with the bad luck I've had since - Gavin hasn't done the chamber in I don't know how long. So do I regret saying goodbye to Katja? Ummm....totally!!!!!

This has been the worst time to not have someone here. While my Dad was in the hospital, we were scrambling because I clearly wouldn't bring them with me. Ed took so much time off from his brand new job - I felt horrible. And the days of the viewing, funeral and burial were very stressful until Miss Kara saved the day. She actually called out from her job in order to help us. Needless to say, I was extremely relieved. Our next choice was for me to go alone without Ed...and I really, really didn't want to do that. I don't think people realize that we just can't hire a "babysitter" like everyone else. You really need a two week orientation before you stay with Gavin - he's not your typical four year old. I can't just have a teenager come by. It's complicated. So, I'm back to taking applications and have a list of about seven people to schedule for interviews as soon as possible.

Responding to mail

I feel so grateful for the emails, the sympathy cards and the texts that were sent to me when my Dad died. I am hoping to acknowledge each one. The last week has not only been busy...but emotionally draining. And now my sisters and I are working on a mountain of thank you notes for my Mom. Each message meant so much to me. I'd often just sit and look through my phone in the midst of the chaos and your messages really helped me gather my strength.

Organ Donation

Tomorrow evening I will be attending the viewing for Caroline, my cousin Jean's daughter. I don't know how to prepare MYSELF...I can't even imagine what they must be going through. I'm grateful to my sister, Bean, who is having me drop the boys off at her house so I can go to the viewing first...and then she will go when I get back.

In an act of selflessness, Caroline's Mom and Dad donated her organs. Do you know that through her death FOUR lives were saved? Caroline was very involved in a special charity that I'd love to share with you. Warriors for Tim was created by Tim's family. Tim died at the age of 13 after succumbing to the H1N1 and a secondary infection. Organ and tissue donation might have saved him, but it took too long to find a donor. The family had asked that "In lieu of flowers" donations be made in Caroline's memory to this worthy charity. So I thought I would put it out there for anyone interested in making a charitable donation this holiday season. You won't need to put an address if you list that the donation is in memory of Caroline Gallagher. The family will be notified, I have been told. I feel so very helpless to help them...sharing a charity that is important to them feels like something practical I can do.

And finally...

Tomorrow is my second beta blood test. Let's all make a wish for a big, HUGE number!

3 comments:

Just wanted to say that you could always find a local private pre-school for Brian. Since his delays are so slight, that might be a good way to go. And, you could still get his therapy at home. Just another idea in case you don't want to go with the delayed pre-school placement.

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

Thank you for visiting and caring about our family!

Follow by Email...

follow chasing rainbows on...

Named by Parents Magazine

Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

Looking for something on my blog?

Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!